18th April 2016

The number thirteen, unlucky for some! For another little boy at GOSH it was his lucky number, having waited thirteen months for a new heart. For Rosie, circuit change number thirteen this weekend was not such a lucky number. Due to a clot in the canula connected to her stomach, and lots of fibrin in the circuit, Rosie required a circuit change. The surgeons took longer than on previous occasions for a number of reasons, the position of the clot and the fact that there is so little left to cut and clamp as Rosie has had so many circuit changes now. Rosie didn’t cope very well and needed a shock from a defib to force her heart back into a normal rhythm. This also meant that the doctors wanted to keep her intubated (on the ventilator) and sedated for longer after the procedure to ensure Rosie was ok. Thankfully, she bounced back in her usual feisty way, jabbing insistently at the ‘I am hungry’ picture on her communication board while she still had the ventilator tube down her throat!

Friday we were told we have now spent over 1000 hours on a VAD device The week leading up to circuit change had been our best yet. We spent the week thoroughly enjoying seeing Rosie eat, although only ice cream, yoghurts and purée foods allowed due to Rosie’s delayed and weak swallow. We also saw lots of smiles and giggles.

We are hoping and praying that we can enjoy more of the same this week and for as long as it takes for Rosie to get her new heart.